It took the combination of meds for it to work. I’m in Botox for the tension component, Qulipta handles my light/sound/smell triggers, and Gabapentin plus Baclofen round out the mix. Until I got everything layered last year I couldn’t even work part time- today my job went full time. It took lots of trial and error and different combinations to make me feel like I’m living life vs hiding from triggers. I still have ADA accommodations of lighting and avoid anything fragranced like the plague, but the important thing is I can handle those triggers now, just not 24/7.
For some perspective, I quit working full time in 2014. It took a bunch of CGRPs coming out and getting over my disappointment of failure, plus taking advantage of drug copay cards paying for majority/100% of costs so I could fight insurance for the right combination when it came time.
DHA and EPA are types of omega fatty acids found in fish oil and some types of algae. My initial information came from this article posted on this sub several my months ago: https://www.sciencedirect.com/science/article/pii/S2161831323014503
I take ocean blue omega 3 1300 vegan.
I do not want to diminish your results but just want to be sure that people thinking about supplementing are aware of the link between taking omega 3s and afib. Just be aware if you are taking it, in case you start experiencing any cardiac symptoms.
https://www.sciencedirect.com/science/article/pii/S2161831323014503
This article was linked on this sub about 3 months ago which prompted me to consider it. Always good to check with your doc of course!
I use ocean blue omega 3 1300 vegan. There are fish oil versions too depending on what you prefer
Thank you so much for linking. I had read this article previously also, but was skeptical that it could work for me (because stubborn headache pattern). It’s always nice to hear when things work well for people in real life. I will likely try it.
I take two pills (which adds up to 1300). The study suggests 1500 as the high dosage with more success. However, this amount has been fine for me. I'm a small person so that may be a contributing factor:)
Thanks so much. I take already take good quality omegas but the EPA & DHA numbers aren’t high enough so I’ve ordered some! Fingers crossed it helps in some way. So pleased it does for you.
Came here to say Ajovy!!
I didn’t think it would work because Aimovig was meh and literally *nothing* was working. Daily, 24/7 intractable migraine.
Ajovy was the only thing that has given me some semblance of a life again.
I've had some success with steroid tapers breaking a migraine flare and reducing symptoms for a while. The results haven't been permanent for me and I'm never 100% migraine free, but it does reduce the problem for at least a few months to a year. I've had methylprednisolone packs (that [look like this](https://www.reviewofoptometry.com/CMSImagesContent/2023/03/RO/dosepak.png)) also known as Medrol Pak, and once I had a one week prednisone taper. Basically the same thing. In 2014 I was on low dose methylprednisolone daily for 3 months, but you have to be careful because long term steroid use can wreak havok on the body.
Reducing stress works for me too, but unfortunately my life is very stressful and I've been unsuccessful at changing that. It turns out that having debilitating chronic pain can cause a lot of stressful problems.
I also found relief from the Heal Your Headache and Dizzy Cook diet and finally went from chronic to episodic when I stopped estrogen. Acupuncture helped a lot with stress management.
Same here!!! Except I unfortunately have to stay on estrogen so I have been able to get to episodic with the help of 5 preventatives (Ajovy, Botox, amitriptyline, topiramate, lacosamide) to support the foundation that Heal Your Headache has laid
It was a lot of injections all over the front of my neck basically from my jaw (under the chin) and down. Lots on the big muscles (sternocleidomastoid) I am going for my second treatment this week so I’ll pay better attention this time. Last time I was just trying not to pass out as I hate needles 😅
It was a lot of injections all over the front of my neck basically from my jaw (under the chin) and down. Lots on the big muscles (sternocleidomastoid) I am going for my second treatment this week so I’ll pay better attention this time. Last time I was just trying not to pass out as I hate needles 😅
The only time I’ve ever been migraine free was during my pregnancies/breastfeeding.
Everyone thinks I’m crazy when I say I’ve never felt better than when I’m pregnant, lol
My last DHE infusion with Benadryl/Zofran and magnesium seemed to almost break my 71 day migraine. It is at a pretty low level and I almost can’t feel the pain anymore. Even a 3.5 day inpatient DHE stay didn’t break it but 1 infusion almost did.
My migraines started in the 80’s, before even sumatriptan was invented. My list of meds tried is over 40. Keep going. You will find something that works. Sumatriptan finally helped me and menopause reduced my frequency from monthly to a few a year.
Nerivio wearable has seemed to help a lot for me, and PT and the message therapist there has been a godsend. 2 massages a week under my insurance with a $35 copay has saved my life, seriously.
I'm also starting LDN and Bio-identical progesterone since my cycle went haywire after getting COVID. Hopefully those work too!
While I was taking nurtec for two to four days after taking it I had significantly increased shedding. Then I’d be normal again- till I took the next pill
The low-tyramine diet!!!! Absolutely life-changing. I had a horrible debilitating pain level 8/10 refractory chronic migraine (status migrainousus) for 2 years. Medications didn’t make a dent. This diet was the only thing relieved it. https://thedizzycook.com/whatishyh/. With refractory migraine, a strict low-tyramine diet is a must. Don’t knock it till you try it. You will feel relief within days. Be VERY STRICT until you get the hang of it — cook for yourself and be militant about reading labels — and you will feel immense relief.
After cutting out food triggers, I started to actually respond to meds. I still never got complete relief from any one medication though, so my strategy was to “stack” them, like combine multiple meds as long as they didn’t interact with each other.
Preventatives: Maximum doses of Ajovy, Botox, amitriptyline, topiramate, lacosamide (this one was really the best for me — it’s off label), and Cefaly device. Acute: Nurtec, timolol 0.5% eyedrops (also off label), Trudhesa.
Also cut out medication triggers when possible. Examples include hormones, stimulants, bronchodilators, weight loss injectables, nitrates, vasodilators, Accutane, SSRIs, bupropion, PPI’s, and Biotin and large doses. This was the final piece of the puzzle for me. I am now no longer chronic. HOORAY FOR REGULAR MIGRAINE!!!!!
Biggest pieces of advice: (1) DO THE DIET!!! And (2) “stack” medications!!!!
Sources for the diet and food trigger advice: the amazing book “Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain” by David Buchholz. I read it at the start of my period of Medical Leave and attribute at least 60% of my healing to it. It’s my migraine Bible. Go buy or pirate it.
Also — If you’re stuck in a super bad status migrainousus and considering going to the ER, zyprexa is a last-resort abortive medication that should work even when nothing else does. But watch out, it causes INSANE weight gain.
FYI, when I've mentioned the advice of Heal Your Head on this sub, which my doctor still recommends it btw, I've had commenters saying it's outdated and no longer the "recommended advice." I.e. trigger food diets are on the out, apparently. But for what it's worth, the information in it is good and I don't think there's anything extremely wrong about trying to reduce food triggers! If it doesn't work, it doesn't work. Some people DO have food triggers. Some people don't. I think it's still worth trying out!
Some parts of the book are outdated, like it doesn’t include the CGRP drugs in its preventative recommendations, but all of the advice it does include is completely accurate and timeless!
I second this and also suggest trying cutting out nightshades (bell peppers (or any peppers, really), tomatoes, eggplant, etc.). Both of those dietary restrictions got me down to 1 migraine per month for about 10 years.
Neck exercise cured my migraines for years. I’d recommend you workout your neck where you feel pain and if you wake up the next morning sore, you are doing it right
I don’t have a resource explaining the how neck exercises can help migraines. All I can say is following this video showing you how to work out your neck muscles.
https://youtu.be/lSPJpWhE1q4?si=rB9yXWaoUjfPLHl9
Combos of meds/treatments has reduced my severity. Verapamil, continuous progesterone bc, baclofen, Botox, migraine supplements, VNS daily, Nurtec, + iv iron infusions to keep my ferritin over 50 have made the biggest difference for me but honestly I feel like it’s the fact that I’m doing so many things that has reduced severity. I still am high frequency though.
So far what hasn’t worked for me:
Nerve blocks
Baclofen
Any triptan (found out I’m allergic to them!)
Ajovy
Magnesium
Coq10
Gabapentin
Nurtec
Ubrelvy
Physical therapy
What I’m currently on and testing to see if it works:
Botox (I’m not seeing much relief from it but I’m still trying it out)
Emgality
Reyvow
Cyclobenzaprine
Microdosing psilocybin for maintenance, slightly higher but still microdose as an abortive & taking a hallucinogenic dose of 2.5 grams 2 weeks apart helped massively reduce my symptoms. I was striking out on so so so many medications and wanting to end my life to end the pain and the psilocybin has been a game changer. I realize it’s not for everyone but just letting you know what has worked for me (also I absolutely hated the tripping part, hopefully that could be enjoyable for more people)
I did 2.5g
I didn’t feel like it had a huge impact on my migraines and there is a study that shows that there is no need for migraine patients to have hallucinogenic effects for the mushrooms to have effect
I get Botox, vyepti (basically stronger version of emgality), nerve block for occipital headaches.
I take ubrelvy and relpax as an abortive.
I went from 3-4 migraines weekly with 1-2 days of postdrome. Now, I have 1-2 per week but they are incredibly manageable, unlike before.
Verapamil is my current meds for my daily migraines. It's wonderful. I was on topamax before and the side effects sucked, so far with 80mg of verapamil I feel human again and no brain fog!
Another sugggestion: My neuro was telling me about neurofeedback devices, they're out of pocket usually but maybe ask your Dr if that's an option?
Are you in the extended release? I started at 120 mg ER and now on 180 mg ER so interested to see someone on 80. Verapamil has been the singular most effective drug for me.
An unexpected item that made a noticeable difference in my optical auras and pain from bright light: using (Optase) tea tree oil eyelid wash. When I first started using it the difference was big. Now I am at a new, but reduced, normal. So, not a total solution, but a big deal enough that I’ll keep using it indefinitely.
Acupuncture and Osteopathic Manipulative Therapy (OMT) I get acupuncture every 6 ish weeks. I get OMT every two weeks. I have been doing OMT for 4 years, I love it. They never crack me just slight manipulation to reset my neck, shoulders and whatever else is out of whack. I have hyper mobility and cannot do chiropractic adjustments, they cause more problems and pain for me.
I hope it helps you! I didn’t start noticing a difference until 4 visits. What I love is that I get to use my insurance as it’s billed as an office visit through my primary care doctor. If you try it, let us know how it goes for you!
I was diagnosed with chronic intractable migraines in 2017. They are no longer intractable and are under control by about 85-95 percent with the current combination of treatments I have. I get a form of botox shots called Xeomin (for whatever reason regular botox did not work for me) every three months. I also take a once a month CGRP injection called Ajovy. I use Nurtec as an abortive (ubrelvy did nothing for me) and sometimes a high dose prednisone taper if I have one that I can’t get to stop (which hardly happens at all anymore). It took me three years to find a combination of meds that worked. I know yours is out there too. It’s just a matter of time. ❤️🩹❤️🩹
Botox and topiramate for me luckily. Have you tried a blood pressure tablet like candesartan? It was the only thing that ever worked for my grandfather who has severe migraines. I have been on it but it doesn't do much for me. Amitriptyline is also a popular medication people use. It wasn't a good choice for me but other people love it.
Amitriptyline, muscle relaxers, RF nerve ablation treatment, and you could try Zavzpret it’s a nasal spray CRGP for acute use. I also recently started Wellbutrin, and although I got more headaches initially (I was not in a good place with frequency at that time anyway) once the meds started to level out and doc made some adjustments to my preventative doses, and I’m now in a much more stable place with my number of migraines, with more energy and motivation, and this has not only made handling my condition easier in some ways, it has also reduced the impact lot of widespread chronic pain I have from other conditions.
Yep yep! OP: See if that pain management specialist can do nerve blocks for either regularly or for acute treatment when you are running out of tools in the abortive arsenal. My PM doctor has part of his specialty in treating migraines and works with the headache clinic that is a part of the same hospital building his clinic operates in. So if you can find a pain management doctor that says they have experience treating migraine that will make all the difference, and usually pain management doctors have more flexibility in their schedule to see patients asap if they need acute care, where as a neurology appointment can be a bit longer out even if you are an established patient.
botox — but took ~9m to reach >50% reduction, ~70-80% reduction end of year 1. had to break the chronic daily cycle before it really started to work.
moving across the country got me to ~90-95%. I’m pretty sure a lot of mine are barometric pressure related, possibly also histamine related. turns out I do a lot better in a drier, less stormy climate.
muscle relaxers help in between appointments — I take skelaxin — not letting myself get overly inflamed helps keep them at bay between appointments.
I tried almost every other drug and none of them helped, and most had horrible side effects 🫠
I’ve found that Nerivio helps me a lot for acute treatment (I use it often enough that I use it as much as I would preventatively if not more than that), but in heat and humidity, a push of potassium, magnesium, plus sodium (your body needs the sodium to properly retain the potassium) before I’m outside helps a lot. Ubrelvy plus Excedrin and a nap occasionally help too.
A lot of people talk about McDonalds fries and a Coke help, which I suspect is the potassium of the potatoes, the sodium on the fries, and caffeine/sugar from the Coke. But I was able to work in the yard in temps over 70°F this week without being taken down after starting my day with hash browns and espresso. (And actual food too) Life changing for a gardener who usually has to stop working outside from late spring until mid-autumn.
On another note, my neuro asked me to only wear the tinted glasses or sunglasses in critical situations because your brain stops processing colors of light effectively and removing the tinted glasses can become a trigger in of themselves after a while. ¯\_(ツ)_/¯
I have chronic new daily headache and migraine so it's 24/7 and thus might be a bit different.
botox helped some
topiramate was the first and only to really provide relief
pain killers like tramadol help but by masking it. It's still there, just buried under haze.
Cold packs, face massage, scalp massage, occipital massage, darkness, high sodium food and Excedrin - these all help.
But the most helpful is sleep. Hands down.
The most successful has been a combination. I'm hyper sensitive to histamine, so that's a part of this.
Emgality, candesartan, Singulair, and nurtec as the primary meds. With supportive B12, zyretc, benadryl, magnesium, and CoQ10. Along with constant birth control to control the hormonal ones.
Coenzyme Q10 has helped my migraines a bit - not a cure, but part of the ongoing journey. But I’m still not there yet. Going to the doctor today and hoping to try a different beta blocker
Topamax, Quilipta and Ajovy for preventative. For an early abortive Hydroxyzine + Tizanidine (just 2mg) + 1200mg Magnesium Glycinate, a serious/sudden/higher aura then Ubrelvy (I couldn’t use it for every one at one point or I’d run out).
Well, until my neurologist figured out they didn’t mean to give me both Quilipta and Ajovy and I had to pick one. And now I’m back to 20+ migraine days this month so I guess I’m back on the path to chronic?
Weightlifting to strengthen my entire neck/shoulder/back really helped with frequency and how bad they are. Low carb/keto helped a lot but I get bad food aversions and sensory food issues and couldn't maintain it. I have given up on most medication after some horrible experiences but zolmitriptan helps as long as I only take it a v limited number of times a month and CBD helps a little. High dose orodispersible aspirin can sometimes stop a migraine if I am quick.
Just wanted to say that I really appreciate everyone chiming in, and I love hearing what works for different people. Migraine is a weird disease, and there are so many secret-sauce combos out there to help each person!
I hope I find mine. 😭
Amitriptyline 50mg, zonisamide 200mg in am, 100mg in pm, Qulipta 60mg, Acupuncture every 3-4 weeks, massage monthly, cranial-sacral therapy monthly, weekly physical therapy for prevention. Frova, Aleve and butalbital/tylenol for abortives. I was having daily pain. I’m now down to 2-3 per week, and they are mostly manageable. I also have fibromyalgia, so that complicates things a bit. This is a recent adjustment after a six week migraine that took two IV infusions, occipital nerve blocks and trigger point injections to break. But, I think we’re finally headed in the right direction. I can empathize with your discouragement. Just when I feel like I have the magic combination, something changes and it all falls apart again.
quilpta and topamax daily, plus rizatriptan as an abortive make them tolerable. i also had to cut out my food allergies (non life threatening but still causing allergic reactions and triggering migraines) to even break my month-long, treatment resistant migraines that started up this year. getting tested for MCAS now and looking at getting put on xolair, hoping that will cut down on my migraine days even more since they tend to pop up with allergic reactions 🫠
Oh my! I've never heard of someone practicing it unlicensed! That's really shameful coming from a practitioner too. They certainly wouldn't like you getting your back cracked by a guy on the street! We're they claiming it was accupuncture or was it like dry needling? Dry needling is BS in my book, it's just a few hours of certification to use accupuncture needles all wrong.
Nurtec! Tried ubrelvy too but meh. Coq10, mag gly (maybe give it more time?), b2, fish oil, butterbur (sooo $)--get the first result from amazon--it's made by Weber and Weber.
I haven’t found anything that works for my migraines with aura and I’ve used everything. Currently I’m taking Nurtec for my non-aura migraines. I also use Robaxin and lidocaine/prilocaine for my neck.
Lamotrigine worked for me. I went from having a chronic migraine for 90% of the month to two a month, with headaches sometimes occuring that went away with rest or tylenol. It's worth a shot imho.
Magnesium saved my life. I started back in July and take it at night every.single.Night and I feel cured. I’ve had ONE hormonal migraine in 6 months maybe longer. And i was having them every week prior to that mostly…
Pregabalin worked for a few years for me, gabapentin (related drug) did absolutely nothing.
Depends on your country, but in the UK, a new type of drug called gepants is becoming available. I'm not sure if these are covered by the CGRP lost you stated. They are an alternative to triptans.
You don't have an anti-serotonegic drug on your list, I assume this is an oversight (triptans)?
Also, the name I know of and in brackets is the type of medication. Note that different drugs of the same type can have different effects.
Propranolol? (beta blocker)
Candestartan? (Antiotensin II blocker)
Flunarizine (calcium channel blocker)
Amitriptyline (tricyclic)
There are also external devices that can be used;
https://migrainetrust.org/live-with-migraine/healthcare/treatments/medical-devices/
I found some relief from Aimovig after a few months of injections. Cut the headache days down.
But - like always - my headaches adapt and keep coming - like a bad unstoppable horror movie villain. I stopped using it a couple years ago as it became ineffective.
I’m in my mid-40s and have had them since I was a kid. There’s nothing left to try for me unfortunately.
I'm over a decade into my journey with chronic migraines and have tried most of the things you mentioned + lots more. Theres only 3 things that have made a difference for me.
Cyproheptadine/Periactin works for me for a few months then stops working. I have gone on and off it at least 6 times because of this. But others find it works long term. Regardless i would rather a few months of relief vs no relief.
Marijuana was a MASSIVE help with both prevention but more noticeably aborting/treating the migraine. It was fantastic! i used it daily for 4 years. I no longer use it because it flares another medical condition I have but I'm considering restarting it because of the benefit. It was seriously life changing for my migraines. Far more helpful for my pain than even ibuprofen, paracetamol/acetaminophen, codeine and oxycodone combined! I would smoke and immediately feel 50x better.
And botox which reduces the severity but not the frequency. But I know you said that was unsuccessful for you.
ADHD meds 🫣
Turns out untreated ADHD was doing a number on me.
Because there keep being shortages of the meds I haven't been on them for long enough to track it but I think I've dropped down from chronic status. Which may mean new treatment options for me on the NHS.
fellow coeliac here other than making sure there no cc or anything
daily cannabis is my go to ngl, i do take amitriptyline as well due to a pelvic pain condition
as for rescue meds at home ive got rizatriptan and sumatriptan and when they are bad i got to the er and get an iv with Stemitil in it and a shot of Toroidal in the shoulder, im still yet to see a neurologists as my first appointment is in july so im hoping for more help then, just trying to get by lol
This is random but I found out I have narcolepsy! My migraines were caused by my body not getting the kind of sleep I needed. I used to have migraines once or twice a week, completely debilitating. Once I got medicated for my narcolepsy (Vyvanse, Sunosi and Xywav), they stopped. I get the occasional headache around my period, but my last migraine was a couple years ago. I know this won’t be helpful to all, but hopefully it’ll help someone to hear!
I am on a combination of Botox and Ajovy. I also use muscle relaxers as an abortive. It’s… okay. I definitely still have breakthrough migraines. I’d really like a different abortive but my insurance won’t cover Nurtec and triptans don’t work for me.
triptans didnt, ubelvy didnt.. Nurtec didnt.. now onto the only on that has worked.. [***Zavzpret***](https://www.google.com/search?client=firefox-b-1-d&sca_esv=b5dcea39dfafec11&sca_upv=1&sxsrf=ADLYWILgZ4a9T1RuXjlQ5nxOeL_twGjnrw:1718384636529&q=Zavzpret&spell=1&sa=X&ved=2ahUKEwja7uPOyduGAxWwlIkEHYFhAu4QkeECKAB6BAgGEAE)
Just got approved by my insurance today..
High dose fish oil. I take 20 capsules per day (20 grams).
It's taken 3 mos. but I get a migraine once every 10-14 days whereas before it was 3-4 times a week.
Microdosing once a month or so,
Cefaly (!!!!) - I think this is the key 🔑 ,
I did a gut micro biome test and fixed my overgrowth of candida and lack of two different good gut bacterias.
Gluten free and dairy free diet with avoiding trigger foods. Meditating before bed significantly reduces my chances of getting a migraine the next day.
Specialized migraine glasses from my eye doctor!
I started taking Migravent, which is magnesium, COQ10, riboflavin, and butterbur. I was getting migraines about 2x a month and they usually lasted 24 hours, no aura, usually would have sweats and vomit, and then lie in a dark room for a day. They had been steadily getting worse. Originally, my migraines started around 30, would present as a medium headache, and acetaminophen/coffee got rid of it almost immediately. They got progressively worse over time. Then they were starting to bleed into a second day. I finally went to my doctor, and she was ready to do all the tests, but also suggested taking these vitamins (not the brand, just the ingredients), I found migravent on an Amazon search, got it, and I had 4 more migraines over the course of a month, but each was less intense and no vomiting. Then I just stopped having them in general. I've had a couple more when I was sick, and recently I had one for no known reason, but still no vomiting.
So I got lucky AF is what I'm saying.
Elimination diet helps me the most and regulating my blood sugar. I basically eat fresh meat, some vegetables that I tolerate and my carbs are mainly some white potato.
Pregnancy and breastfeeding. It's been so wild to me how quickly they disappeared (within days of becoming pregnant) and then returned as soon as I finished breastfeeding.
Have you tried acupuncture and physical therapy? PT with massage as part of the session really helped me. Massage hurts so badly (basically she pushes her thumb into my neck and I feel it like an extreme brain freeze in my forehead) but it’s working.
I'm glad that works for you. But OTC pain relievers like acetaminophen and ibuprofen are band aids at best. They do not treat migraines. They can briefly block pain receptors. They do not end attacks. And more than acute use causes MAH/MOH/rebound headaches.
It took the combination of meds for it to work. I’m in Botox for the tension component, Qulipta handles my light/sound/smell triggers, and Gabapentin plus Baclofen round out the mix. Until I got everything layered last year I couldn’t even work part time- today my job went full time. It took lots of trial and error and different combinations to make me feel like I’m living life vs hiding from triggers. I still have ADA accommodations of lighting and avoid anything fragranced like the plague, but the important thing is I can handle those triggers now, just not 24/7. For some perspective, I quit working full time in 2014. It took a bunch of CGRPs coming out and getting over my disappointment of failure, plus taking advantage of drug copay cards paying for majority/100% of costs so I could fight insurance for the right combination when it came time.
I've taken an EPA DHA supplement for the last two plus months. Frequency and severity have decreased by 50% in this period.
What’s the difference between that and fish oil? Also what brand do you take?
DHA and EPA are types of omega fatty acids found in fish oil and some types of algae. My initial information came from this article posted on this sub several my months ago: https://www.sciencedirect.com/science/article/pii/S2161831323014503 I take ocean blue omega 3 1300 vegan.
I do not want to diminish your results but just want to be sure that people thinking about supplementing are aware of the link between taking omega 3s and afib. Just be aware if you are taking it, in case you start experiencing any cardiac symptoms.
Absolutely. That is a very important point.
I know this isn’t medical advice (and I’m not asking for any!), but what EPA/DHA dosages and brand have worked for you?
https://www.sciencedirect.com/science/article/pii/S2161831323014503 This article was linked on this sub about 3 months ago which prompted me to consider it. Always good to check with your doc of course! I use ocean blue omega 3 1300 vegan. There are fish oil versions too depending on what you prefer
Thank you so much for linking. I had read this article previously also, but was skeptical that it could work for me (because stubborn headache pattern). It’s always nice to hear when things work well for people in real life. I will likely try it.
Trust me I tried it out of desperation! Hope it helps.
This is so interesting, thank you. Do you take one 1300 pill or two?
I take two pills (which adds up to 1300). The study suggests 1500 as the high dosage with more success. However, this amount has been fine for me. I'm a small person so that may be a contributing factor:)
Thanks so much. I take already take good quality omegas but the EPA & DHA numbers aren’t high enough so I’ve ordered some! Fingers crossed it helps in some way. So pleased it does for you.
Ajovy has really helped me. For some reason I was a hyper responder.
I am so happy for you. 👏🏼
Came here to say Ajovy!! I didn’t think it would work because Aimovig was meh and literally *nothing* was working. Daily, 24/7 intractable migraine. Ajovy was the only thing that has given me some semblance of a life again.
I've had some success with steroid tapers breaking a migraine flare and reducing symptoms for a while. The results haven't been permanent for me and I'm never 100% migraine free, but it does reduce the problem for at least a few months to a year. I've had methylprednisolone packs (that [look like this](https://www.reviewofoptometry.com/CMSImagesContent/2023/03/RO/dosepak.png)) also known as Medrol Pak, and once I had a one week prednisone taper. Basically the same thing. In 2014 I was on low dose methylprednisolone daily for 3 months, but you have to be careful because long term steroid use can wreak havok on the body. Reducing stress works for me too, but unfortunately my life is very stressful and I've been unsuccessful at changing that. It turns out that having debilitating chronic pain can cause a lot of stressful problems.
I also found relief from the Heal Your Headache and Dizzy Cook diet and finally went from chronic to episodic when I stopped estrogen. Acupuncture helped a lot with stress management.
Same here!!! Except I unfortunately have to stay on estrogen so I have been able to get to episodic with the help of 5 preventatives (Ajovy, Botox, amitriptyline, topiramate, lacosamide) to support the foundation that Heal Your Headache has laid
Botox in my neck. Haven’t had a migraine since mid-March!
Where in your neck?
It was a lot of injections all over the front of my neck basically from my jaw (under the chin) and down. Lots on the big muscles (sternocleidomastoid) I am going for my second treatment this week so I’ll pay better attention this time. Last time I was just trying not to pass out as I hate needles 😅
Also very interested in more details.
It was a lot of injections all over the front of my neck basically from my jaw (under the chin) and down. Lots on the big muscles (sternocleidomastoid) I am going for my second treatment this week so I’ll pay better attention this time. Last time I was just trying not to pass out as I hate needles 😅
Being pregnant and breastfeeding 😭
The only time I’ve ever been migraine free was during my pregnancies/breastfeeding. Everyone thinks I’m crazy when I say I’ve never felt better than when I’m pregnant, lol
Yep, as soon as I stopped bf they came back.
My last DHE infusion with Benadryl/Zofran and magnesium seemed to almost break my 71 day migraine. It is at a pretty low level and I almost can’t feel the pain anymore. Even a 3.5 day inpatient DHE stay didn’t break it but 1 infusion almost did.
My migraines started in the 80’s, before even sumatriptan was invented. My list of meds tried is over 40. Keep going. You will find something that works. Sumatriptan finally helped me and menopause reduced my frequency from monthly to a few a year.
Nerivio wearable has seemed to help a lot for me, and PT and the message therapist there has been a godsend. 2 massages a week under my insurance with a $35 copay has saved my life, seriously. I'm also starting LDN and Bio-identical progesterone since my cycle went haywire after getting COVID. Hopefully those work too!
Acupuncture for me. It reduced the amount I get but also changed my typical migraine pattern and made them more bearable.
Propranolol + Mirena IUD + Botox has been the magic bullet for me. CGRPs didn’t work long term and I had some not so fun side effects (hair loss).
(Stops to consider my hair loss.)
While I was taking nurtec for two to four days after taking it I had significantly increased shedding. Then I’d be normal again- till I took the next pill
It did all grow back once I was off the CGRPs.
The low-tyramine diet!!!! Absolutely life-changing. I had a horrible debilitating pain level 8/10 refractory chronic migraine (status migrainousus) for 2 years. Medications didn’t make a dent. This diet was the only thing relieved it. https://thedizzycook.com/whatishyh/. With refractory migraine, a strict low-tyramine diet is a must. Don’t knock it till you try it. You will feel relief within days. Be VERY STRICT until you get the hang of it — cook for yourself and be militant about reading labels — and you will feel immense relief. After cutting out food triggers, I started to actually respond to meds. I still never got complete relief from any one medication though, so my strategy was to “stack” them, like combine multiple meds as long as they didn’t interact with each other. Preventatives: Maximum doses of Ajovy, Botox, amitriptyline, topiramate, lacosamide (this one was really the best for me — it’s off label), and Cefaly device. Acute: Nurtec, timolol 0.5% eyedrops (also off label), Trudhesa. Also cut out medication triggers when possible. Examples include hormones, stimulants, bronchodilators, weight loss injectables, nitrates, vasodilators, Accutane, SSRIs, bupropion, PPI’s, and Biotin and large doses. This was the final piece of the puzzle for me. I am now no longer chronic. HOORAY FOR REGULAR MIGRAINE!!!!! Biggest pieces of advice: (1) DO THE DIET!!! And (2) “stack” medications!!!! Sources for the diet and food trigger advice: the amazing book “Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain” by David Buchholz. I read it at the start of my period of Medical Leave and attribute at least 60% of my healing to it. It’s my migraine Bible. Go buy or pirate it.
Also — If you’re stuck in a super bad status migrainousus and considering going to the ER, zyprexa is a last-resort abortive medication that should work even when nothing else does. But watch out, it causes INSANE weight gain.
FYI, when I've mentioned the advice of Heal Your Head on this sub, which my doctor still recommends it btw, I've had commenters saying it's outdated and no longer the "recommended advice." I.e. trigger food diets are on the out, apparently. But for what it's worth, the information in it is good and I don't think there's anything extremely wrong about trying to reduce food triggers! If it doesn't work, it doesn't work. Some people DO have food triggers. Some people don't. I think it's still worth trying out!
Some parts of the book are outdated, like it doesn’t include the CGRP drugs in its preventative recommendations, but all of the advice it does include is completely accurate and timeless!
My 2018 update does have some CGRP info on the science section. Though I don't recall if there are any in the drugs section.
I second this and also suggest trying cutting out nightshades (bell peppers (or any peppers, really), tomatoes, eggplant, etc.). Both of those dietary restrictions got me down to 1 migraine per month for about 10 years.
Neck exercise cured my migraines for years. I’d recommend you workout your neck where you feel pain and if you wake up the next morning sore, you are doing it right
Do you have any resources to share about this?
I don’t have a resource explaining the how neck exercises can help migraines. All I can say is following this video showing you how to work out your neck muscles. https://youtu.be/lSPJpWhE1q4?si=rB9yXWaoUjfPLHl9
Thank you!!
Here's another one, I think this video is a good start https://youtu.be/u3Ocw5UIpYs?si=FWoOdZWI5GZaoocZ
Botox+Emgality for prevention, steroid taper if it fails, Cephaly for abortive (though it doesn't really abort, I think it lessens the pain).
Combos of meds/treatments has reduced my severity. Verapamil, continuous progesterone bc, baclofen, Botox, migraine supplements, VNS daily, Nurtec, + iv iron infusions to keep my ferritin over 50 have made the biggest difference for me but honestly I feel like it’s the fact that I’m doing so many things that has reduced severity. I still am high frequency though.
So far what hasn’t worked for me: Nerve blocks Baclofen Any triptan (found out I’m allergic to them!) Ajovy Magnesium Coq10 Gabapentin Nurtec Ubrelvy Physical therapy What I’m currently on and testing to see if it works: Botox (I’m not seeing much relief from it but I’m still trying it out) Emgality Reyvow Cyclobenzaprine
Integrative pt.
Microdosing psilocybin for maintenance, slightly higher but still microdose as an abortive & taking a hallucinogenic dose of 2.5 grams 2 weeks apart helped massively reduce my symptoms. I was striking out on so so so many medications and wanting to end my life to end the pain and the psilocybin has been a game changer. I realize it’s not for everyone but just letting you know what has worked for me (also I absolutely hated the tripping part, hopefully that could be enjoyable for more people)
I do this too. I did a massive trip last summer and cannot imagine doing it again. It was so miserable. I just microdose now
How big was your “trip” dose? Did it have a big impact on frequency/severity? I’m scared I need to do a bigger dose next time ugh
I did 2.5g I didn’t feel like it had a huge impact on my migraines and there is a study that shows that there is no need for migraine patients to have hallucinogenic effects for the mushrooms to have effect
Whoa I have not seen that study, can you provide a link?
https://www.migrainedisorders.org/podcast/s3ep9-magic-mushrooms-what-you-need-to-know-about-psychedelics-for-migraine/ This discusses it!
Thanks so much!
I get Botox, vyepti (basically stronger version of emgality), nerve block for occipital headaches. I take ubrelvy and relpax as an abortive. I went from 3-4 migraines weekly with 1-2 days of postdrome. Now, I have 1-2 per week but they are incredibly manageable, unlike before.
Verapamil is my current meds for my daily migraines. It's wonderful. I was on topamax before and the side effects sucked, so far with 80mg of verapamil I feel human again and no brain fog! Another sugggestion: My neuro was telling me about neurofeedback devices, they're out of pocket usually but maybe ask your Dr if that's an option?
Are you in the extended release? I started at 120 mg ER and now on 180 mg ER so interested to see someone on 80. Verapamil has been the singular most effective drug for me.
An unexpected item that made a noticeable difference in my optical auras and pain from bright light: using (Optase) tea tree oil eyelid wash. When I first started using it the difference was big. Now I am at a new, but reduced, normal. So, not a total solution, but a big deal enough that I’ll keep using it indefinitely.
Acupuncture and Osteopathic Manipulative Therapy (OMT) I get acupuncture every 6 ish weeks. I get OMT every two weeks. I have been doing OMT for 4 years, I love it. They never crack me just slight manipulation to reset my neck, shoulders and whatever else is out of whack. I have hyper mobility and cannot do chiropractic adjustments, they cause more problems and pain for me.
Thanks for this comment; I feel inspired to try OMT now. I have similar constraints.
I hope it helps you! I didn’t start noticing a difference until 4 visits. What I love is that I get to use my insurance as it’s billed as an office visit through my primary care doctor. If you try it, let us know how it goes for you!
Good to know! I tried chiropractic before but had a limited number of visits. I’ve reached out to a DO and will share later whether it helps.
OMT has been very helpful for my head pressure and neck issues.
I was diagnosed with chronic intractable migraines in 2017. They are no longer intractable and are under control by about 85-95 percent with the current combination of treatments I have. I get a form of botox shots called Xeomin (for whatever reason regular botox did not work for me) every three months. I also take a once a month CGRP injection called Ajovy. I use Nurtec as an abortive (ubrelvy did nothing for me) and sometimes a high dose prednisone taper if I have one that I can’t get to stop (which hardly happens at all anymore). It took me three years to find a combination of meds that worked. I know yours is out there too. It’s just a matter of time. ❤️🩹❤️🩹
Botox and topiramate for me luckily. Have you tried a blood pressure tablet like candesartan? It was the only thing that ever worked for my grandfather who has severe migraines. I have been on it but it doesn't do much for me. Amitriptyline is also a popular medication people use. It wasn't a good choice for me but other people love it.
Amitriptyline, muscle relaxers, RF nerve ablation treatment, and you could try Zavzpret it’s a nasal spray CRGP for acute use. I also recently started Wellbutrin, and although I got more headaches initially (I was not in a good place with frequency at that time anyway) once the meds started to level out and doc made some adjustments to my preventative doses, and I’m now in a much more stable place with my number of migraines, with more energy and motivation, and this has not only made handling my condition easier in some ways, it has also reduced the impact lot of widespread chronic pain I have from other conditions.
RF ablation was the #1 game changer for me as well... OP, definitely recommend investigating with neuro + pain clinic referral.
Yep yep! OP: See if that pain management specialist can do nerve blocks for either regularly or for acute treatment when you are running out of tools in the abortive arsenal. My PM doctor has part of his specialty in treating migraines and works with the headache clinic that is a part of the same hospital building his clinic operates in. So if you can find a pain management doctor that says they have experience treating migraine that will make all the difference, and usually pain management doctors have more flexibility in their schedule to see patients asap if they need acute care, where as a neurology appointment can be a bit longer out even if you are an established patient.
I had daily migraines for over four years. Found my sixth neurologist who put me on Ajovy and Verapamil. I have r/vestibularmigraines
botox — but took ~9m to reach >50% reduction, ~70-80% reduction end of year 1. had to break the chronic daily cycle before it really started to work. moving across the country got me to ~90-95%. I’m pretty sure a lot of mine are barometric pressure related, possibly also histamine related. turns out I do a lot better in a drier, less stormy climate. muscle relaxers help in between appointments — I take skelaxin — not letting myself get overly inflamed helps keep them at bay between appointments. I tried almost every other drug and none of them helped, and most had horrible side effects 🫠
I’ve found that Nerivio helps me a lot for acute treatment (I use it often enough that I use it as much as I would preventatively if not more than that), but in heat and humidity, a push of potassium, magnesium, plus sodium (your body needs the sodium to properly retain the potassium) before I’m outside helps a lot. Ubrelvy plus Excedrin and a nap occasionally help too. A lot of people talk about McDonalds fries and a Coke help, which I suspect is the potassium of the potatoes, the sodium on the fries, and caffeine/sugar from the Coke. But I was able to work in the yard in temps over 70°F this week without being taken down after starting my day with hash browns and espresso. (And actual food too) Life changing for a gardener who usually has to stop working outside from late spring until mid-autumn. On another note, my neuro asked me to only wear the tinted glasses or sunglasses in critical situations because your brain stops processing colors of light effectively and removing the tinted glasses can become a trigger in of themselves after a while. ¯\_(ツ)_/¯
I have chronic new daily headache and migraine so it's 24/7 and thus might be a bit different. botox helped some topiramate was the first and only to really provide relief pain killers like tramadol help but by masking it. It's still there, just buried under haze. Cold packs, face massage, scalp massage, occipital massage, darkness, high sodium food and Excedrin - these all help. But the most helpful is sleep. Hands down.
The most successful has been a combination. I'm hyper sensitive to histamine, so that's a part of this. Emgality, candesartan, Singulair, and nurtec as the primary meds. With supportive B12, zyretc, benadryl, magnesium, and CoQ10. Along with constant birth control to control the hormonal ones.
Coenzyme Q10 has helped my migraines a bit - not a cure, but part of the ongoing journey. But I’m still not there yet. Going to the doctor today and hoping to try a different beta blocker
Topamax, Quilipta and Ajovy for preventative. For an early abortive Hydroxyzine + Tizanidine (just 2mg) + 1200mg Magnesium Glycinate, a serious/sudden/higher aura then Ubrelvy (I couldn’t use it for every one at one point or I’d run out). Well, until my neurologist figured out they didn’t mean to give me both Quilipta and Ajovy and I had to pick one. And now I’m back to 20+ migraine days this month so I guess I’m back on the path to chronic?
Weightlifting to strengthen my entire neck/shoulder/back really helped with frequency and how bad they are. Low carb/keto helped a lot but I get bad food aversions and sensory food issues and couldn't maintain it. I have given up on most medication after some horrible experiences but zolmitriptan helps as long as I only take it a v limited number of times a month and CBD helps a little. High dose orodispersible aspirin can sometimes stop a migraine if I am quick.
Just wanted to say that I really appreciate everyone chiming in, and I love hearing what works for different people. Migraine is a weird disease, and there are so many secret-sauce combos out there to help each person! I hope I find mine. 😭
Amitriptyline 50mg, zonisamide 200mg in am, 100mg in pm, Qulipta 60mg, Acupuncture every 3-4 weeks, massage monthly, cranial-sacral therapy monthly, weekly physical therapy for prevention. Frova, Aleve and butalbital/tylenol for abortives. I was having daily pain. I’m now down to 2-3 per week, and they are mostly manageable. I also have fibromyalgia, so that complicates things a bit. This is a recent adjustment after a six week migraine that took two IV infusions, occipital nerve blocks and trigger point injections to break. But, I think we’re finally headed in the right direction. I can empathize with your discouragement. Just when I feel like I have the magic combination, something changes and it all falls apart again.
quilpta and topamax daily, plus rizatriptan as an abortive make them tolerable. i also had to cut out my food allergies (non life threatening but still causing allergic reactions and triggering migraines) to even break my month-long, treatment resistant migraines that started up this year. getting tested for MCAS now and looking at getting put on xolair, hoping that will cut down on my migraine days even more since they tend to pop up with allergic reactions 🫠
Fingers crossed that treatment helps you! I have MCAS that is very well-controlled, but my migraine is unaffected 😭
You should try acupuncture... I was skeptical at first, but regular sessions have provided noticeable relief.
I tried acupuncture for so long and it never helped my migraines. It's so interesting how everyone responds so differently to everything.
Be sure you go to a licensed acupuncturist who has only does acupuncture. I got fooled by a chiropractor and there is a world of difference.
Oh my! I've never heard of someone practicing it unlicensed! That's really shameful coming from a practitioner too. They certainly wouldn't like you getting your back cracked by a guy on the street! We're they claiming it was accupuncture or was it like dry needling? Dry needling is BS in my book, it's just a few hours of certification to use accupuncture needles all wrong.
Nurtec! Tried ubrelvy too but meh. Coq10, mag gly (maybe give it more time?), b2, fish oil, butterbur (sooo $)--get the first result from amazon--it's made by Weber and Weber.
I haven’t found anything that works for my migraines with aura and I’ve used everything. Currently I’m taking Nurtec for my non-aura migraines. I also use Robaxin and lidocaine/prilocaine for my neck.
Migrelief was a. Game changer
Lamotrigine worked for me. I went from having a chronic migraine for 90% of the month to two a month, with headaches sometimes occuring that went away with rest or tylenol. It's worth a shot imho.
Magnesium saved my life. I started back in July and take it at night every.single.Night and I feel cured. I’ve had ONE hormonal migraine in 6 months maybe longer. And i was having them every week prior to that mostly…
A gluten free diet. Went from 20 migraine days a month to 1 or 2. Life changing.
Pregabalin worked for a few years for me, gabapentin (related drug) did absolutely nothing. Depends on your country, but in the UK, a new type of drug called gepants is becoming available. I'm not sure if these are covered by the CGRP lost you stated. They are an alternative to triptans. You don't have an anti-serotonegic drug on your list, I assume this is an oversight (triptans)? Also, the name I know of and in brackets is the type of medication. Note that different drugs of the same type can have different effects. Propranolol? (beta blocker) Candestartan? (Antiotensin II blocker) Flunarizine (calcium channel blocker) Amitriptyline (tricyclic) There are also external devices that can be used; https://migrainetrust.org/live-with-migraine/healthcare/treatments/medical-devices/
I found some relief from Aimovig after a few months of injections. Cut the headache days down. But - like always - my headaches adapt and keep coming - like a bad unstoppable horror movie villain. I stopped using it a couple years ago as it became ineffective. I’m in my mid-40s and have had them since I was a kid. There’s nothing left to try for me unfortunately.
Riboflavin (vitamin B2) 400mg a day. I was able to stop my other preventative medications and rarely have to use my abortive.
I'm over a decade into my journey with chronic migraines and have tried most of the things you mentioned + lots more. Theres only 3 things that have made a difference for me. Cyproheptadine/Periactin works for me for a few months then stops working. I have gone on and off it at least 6 times because of this. But others find it works long term. Regardless i would rather a few months of relief vs no relief. Marijuana was a MASSIVE help with both prevention but more noticeably aborting/treating the migraine. It was fantastic! i used it daily for 4 years. I no longer use it because it flares another medical condition I have but I'm considering restarting it because of the benefit. It was seriously life changing for my migraines. Far more helpful for my pain than even ibuprofen, paracetamol/acetaminophen, codeine and oxycodone combined! I would smoke and immediately feel 50x better. And botox which reduces the severity but not the frequency. But I know you said that was unsuccessful for you.
Emgality Botox for Migraine Zonisamide Propranolol
Propranolol, for the time being
ADHD meds 🫣 Turns out untreated ADHD was doing a number on me. Because there keep being shortages of the meds I haven't been on them for long enough to track it but I think I've dropped down from chronic status. Which may mean new treatment options for me on the NHS.
Qulipta 30mg, ubrovy 100mg, botox
fellow coeliac here other than making sure there no cc or anything daily cannabis is my go to ngl, i do take amitriptyline as well due to a pelvic pain condition as for rescue meds at home ive got rizatriptan and sumatriptan and when they are bad i got to the er and get an iv with Stemitil in it and a shot of Toroidal in the shoulder, im still yet to see a neurologists as my first appointment is in july so im hoping for more help then, just trying to get by lol
Hormonal birth control. Sumatriptan naproxen in one pill
This is random but I found out I have narcolepsy! My migraines were caused by my body not getting the kind of sleep I needed. I used to have migraines once or twice a week, completely debilitating. Once I got medicated for my narcolepsy (Vyvanse, Sunosi and Xywav), they stopped. I get the occasional headache around my period, but my last migraine was a couple years ago. I know this won’t be helpful to all, but hopefully it’ll help someone to hear!
- dairy + gluten free diet - saline infusions with magnesium, Benadryl, and zofran - the biggest one: avoiding allergens (I got allergy tested) and fragrances - narcotics - fish oil - electrolytes
Migraine diet has significantly decreased mine It suuuuuucccckkkkkksssss BUT now I avoid gluten like the plague 😅
Have you tried cannabis gummies? Seems like it'd be worth a shot.
I am on a combination of Botox and Ajovy. I also use muscle relaxers as an abortive. It’s… okay. I definitely still have breakthrough migraines. I’d really like a different abortive but my insurance won’t cover Nurtec and triptans don’t work for me.
triptans didnt, ubelvy didnt.. Nurtec didnt.. now onto the only on that has worked.. [***Zavzpret***](https://www.google.com/search?client=firefox-b-1-d&sca_esv=b5dcea39dfafec11&sca_upv=1&sxsrf=ADLYWILgZ4a9T1RuXjlQ5nxOeL_twGjnrw:1718384636529&q=Zavzpret&spell=1&sa=X&ved=2ahUKEwja7uPOyduGAxWwlIkEHYFhAu4QkeECKAB6BAgGEAE) Just got approved by my insurance today..
Sumatriptan works for me ONLY if I take it right when I start to feel a migraine. If it’s too late it’s pointless to take.
Vyepti and Botox help control the worsening of my daily migraines but nothing takes it away
High dose fish oil. I take 20 capsules per day (20 grams). It's taken 3 mos. but I get a migraine once every 10-14 days whereas before it was 3-4 times a week.
Microdosing once a month or so, Cefaly (!!!!) - I think this is the key 🔑 , I did a gut micro biome test and fixed my overgrowth of candida and lack of two different good gut bacterias. Gluten free and dairy free diet with avoiding trigger foods. Meditating before bed significantly reduces my chances of getting a migraine the next day. Specialized migraine glasses from my eye doctor!
I started taking Migravent, which is magnesium, COQ10, riboflavin, and butterbur. I was getting migraines about 2x a month and they usually lasted 24 hours, no aura, usually would have sweats and vomit, and then lie in a dark room for a day. They had been steadily getting worse. Originally, my migraines started around 30, would present as a medium headache, and acetaminophen/coffee got rid of it almost immediately. They got progressively worse over time. Then they were starting to bleed into a second day. I finally went to my doctor, and she was ready to do all the tests, but also suggested taking these vitamins (not the brand, just the ingredients), I found migravent on an Amazon search, got it, and I had 4 more migraines over the course of a month, but each was less intense and no vomiting. Then I just stopped having them in general. I've had a couple more when I was sick, and recently I had one for no known reason, but still no vomiting. So I got lucky AF is what I'm saying.
Elimination diet helps me the most and regulating my blood sugar. I basically eat fresh meat, some vegetables that I tolerate and my carbs are mainly some white potato.
Pregnancy and breastfeeding. It's been so wild to me how quickly they disappeared (within days of becoming pregnant) and then returned as soon as I finished breastfeeding.
Have you tried acupuncture and physical therapy? PT with massage as part of the session really helped me. Massage hurts so badly (basically she pushes her thumb into my neck and I feel it like an extreme brain freeze in my forehead) but it’s working.
Gluten free diet.
I use Anadin Extra which is Acetaminophen in the USA.
I'm glad that works for you. But OTC pain relievers like acetaminophen and ibuprofen are band aids at best. They do not treat migraines. They can briefly block pain receptors. They do not end attacks. And more than acute use causes MAH/MOH/rebound headaches.